Living With Type I Diabeteshttps://www.garvan.org.au/research/collaborative-programs/functional-genomics-of-type-1-diabetes-complications/living-with-type-1-diabeteshttps://www.garvan.org.au/@@site-logo/garvan2017.svg

Living With Type I Diabetes

“Islet cell transplantation has given me my life back.”

Since being diagnosed with type 1 diabetes in 1975, Susan Czernich’s life has been increasingly impacted by the disease and its associated complications. Prepared to try anything to improve her circumstances, Susan underwent islet cell transplantation, and the results have been nothing short of amazing.

For decades, type 1 diabetes significantly affected many aspects of Susan’s life. In her early career, Susan was a hairdresser. However, in a busy salon, Susan regularly skipped meals and her health often took a back seat, resulting in many ‘hypo’ episodes (hypoglycaemia – when blood sugar levels drop too low).

Susan was also prone to catching anything and everything. “I quickly used up my sick leave and had a lot of unpaid days off work. Life wasn’t much fun.”

About 22 years ago, Susan’s diabetes became chronic. No matter how diligent she was in managing her diabetes, she still had hypo episodes which were becoming increasingly severe. During this time, Susan also began to suffer depression.

Susan says her husband was a terrific support however, their marriage eventually broke down. While she doesn’t blame the break-up of her marriage on diabetes and its affects, Susan believes it was a contributing factor.

Between the ages of 9 and 14, Susan says her son, Nathan was amazing. “He really looked after me because a lot of the time, I was just so unwell.”

Eventually, Susan was placed on an insulin pump which stabilised the disease to a degree. However, 12 months later, the hypo episodes started again and there was nothing she could do to control them. “I had hypo episodes in public and I had no idea what was going on. I feared sleeping in my home alone, in case I had a hypo in my sleep. When my son, Nathan was staying with his father, a friend or relative would come to stay, or I would visit them so I wasn’t alone. There was someone there when I woke up, and if I didn’t wake up, there was someone there to help.

“I was about to relinquish my driver’s licence. The way things were, I figured I was either going to die in my sleep, or behind the wheel following a hypo episode – in which case I could have harmed others too.

“In short, it was a shocking way to live. At this point, I was prepared to try anything.”

It was Susan’s endocrinologist who thought she might be a suitable candidate for islet transplantation. Tests showed Susan was suitable and she went on the transplant list and waited for a donor.

Susan has had two procedures, with a third pending. Islet cells are very delicate, so between taking them from the donor and implanting them, quite a few cells die. It is difficult to know how many remain active when they are implanted. As Susan’s previous transplants have been successful, specialists believe she will only need one more to have received an appropriate number of active cells.

So far, the results have been outstanding. Susan was completely off insulin for nine and a half months, and is now taking only a small amount. Her specialists are confident that, while Susan might need small amounts of insulin throughout her life, she will never experience life-threatening hypo episodes like she used to.

“To say I’ve got my life back is an understatement. I can work 99 per cent of the time – I’m hardly ever sick. I can sleep confidently in the house alone. Although I’m still careful about what I eat, I can pretty much eat whatever I want, whenever I want.”

Most importantly, Susan no longer feels out of control physically. “I feel amazing!”

Susan is very grateful to the researchers who made this procedure possible, and believes that medical research requires far more support and attention from both the public and the Government. “People just don’t know about this disease and how devastating it can be. They also don’t realise just how many passionate and dedicated people are working hard in the background, on very limited budgets, to really improve lives.”

Susan Czernich is living proof that medical research does change lives.

“What I am really hopeful for is a complete cure, without a lifetime of drugs.”

Aged 25, the wonderful news that Melissa Green was three months pregnant was clouded by a diagnosis of type 1 diabetes.

As her diabetes had not been controlled in the first three months of the pregnancy, Melissa was warned that this could lead to complications and, sadly, this was the case and the pregnancy was not successful.

However, this had confirmed to Melissa that she wanted a family, and in the next five years, Melissa was pregnant three times. Managing her diabetes at the best of times was hard work, but Melissa felt she had not received any information about dealing with the disease during pregnancy.

“No one told me about “lows” (or hypos), and when I had them during pregnancy, I didn’t understand. At one point, I had a low that was so bad, my husband had to call an ambulance.”

Now, almost 15 years after her diagnosis, Melissa feels on top of her diabetes. “When I was first diagnosed, I was recommended a carbohydrate-heavy diet. However, this made me feel uncomfortable and I put on a lot of weight, and the disease wasn’t well-controlled at all.

“With some trial and error, I’ve found a diet and exercise regime that works well for me. I am constantly thinking about food and doing calculations in my head, but I feel in control and healthy, which is wonderful.”

Melissa is using long-acting and short-acting insulin, and while she still has hypos, they are only occasional and are manageable. Her love of exercise and travel has not been hampered, even climbing in the Himalaya’s. “The altitude and the cold impacted my sugar levels, and they were very low at some points. I plan to go next year and climb even higher – I just have to be really vigilant about monitoring my levels.

“I feel lucky to live in an age when we can treat the disease with insulin and monitor sugar levels. Most days, I see type 1 diabetes as just being a lot of hard work to manage – a “pain”. Yet, I am very aware that my situation could be a lot worse.”

In 2013, Melissa’s son Charlie was about to turn 11, and he too was diagnosed with type 1 diabetes. Again, Charlie’s disease is well managed with insulin, diet and exercise.

“It’s tough when you are young because you just want to be like your friends. So, having to monitor sugar levels, inject insulin and watch what and when you eat is not easy. He is managing really well though.”

Melissa and her family are fortunate enough to travel, and a recent trip to Mexico really highlighted the planning required to travel with two type 1 diabetics in the family.

“We had to take four spare glucose monitors, lots of spare batteries and so many needles and insulin. Plus, trying to maintain a diet is difficult. Charlie’s sugars did jump quite high because it was impossible to be as vigilant about diet as he is at home.”

Looking to the future, Melissa is focused on how her son’s life might be improved by breakthroughs in medical research.

“On a day-to-day basis, it would be great to monitor sugars without needing to prick a finger a few times a day. Something non-intrusive – like a wrist band – that monitors levels all the time would be ideal. An alarm to warn you that your levels are dropping would mean that, even if I was asleep, my husband would hear the alarm and be able to assist me before a hypo became too severe. A non-intrusive way to deliver insulin would also be a huge help.

“Of course, what I am really hopeful for is a complete cure, without a lifetime of drugs. That is what I really hope for my son and future generations of type 1 diabetics.”